Battling a life-threatening disorder, with energy and a smile

10:04 AM, Apr 13, 2011   |    comments
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There's cute, and then there's four-year-old Hyde Talbot.

He sits at the hospital, Children's Healthcare of Atlanta at Egleston, checking out his iPad, blissfully distracted -- all while he takes the medicine that is keeping him alive.

Says his mother, Phyllis Talbot, "He's the toughest little kid you've ever seen."

When he was just 18 months old, Hyde was diagnosed with atypical HUS. Roughly 300-400 people in America have it -- a genetic disease that attacks the red blood cells and eventually destroys the kidneys and the immune system. For Hyde it meant daily dialysis, weeks in the hospital, and month after month of pain -- which he took fully in stride.

"He was all excited to have a sleepover at the hospital," recalls mom Phyllis, "because he liked to order the food and he liked to play in the bed with the remotes that go up and down. It was a fun place."

Meanwhile, his parents faced a major decision about his long-term future. They could sign off on a double kidney-and-liver transplant, which is as risky as it sounds, or they could take a chance on something new: combine the kidney transplant with an experimental treatment called Soliris.

"Everything we heard about it, everything people told us about it, it was 100% effective," said Hyde's father, Bill Talbot. "The bigger gamble would have been to do the double-transplant."

The Talbots held their breath, and Hyde's uncle Warren donated his kidney

And so far? Success. Hyde is back to acting like, well, a four-year-old boy.

"He's only the third person to do [this treatment for atypical HUS], so whenever the pharmacist comes to see us, she just laughs. She's like, 'We don't know what this is gonna do long-term.'"

It's why the Talbots doing whatever they can to raise awareness and money for research of this rare disorder. Its why, this weekend, they'll be hosting the third annual Hike 4 Hyde at Sawnee Mountain Reserve in Cumming. The proceeds go to research for Atypical HUS and Children's Healthcare of Atlanta.

Hyde will be there, walking and happy, still blissfully distracted from the odds he has beaten.

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